A Chinese translation of this page has been provided, courtesy of a team in China (contact person: Tao Yuting) - thanks! it's here. Another Chinese translation, by Lichao Chen and Kathy E. Jiang), is here. A German translation by Lisi Driner (thanks!) is here.

July 25th, 2008

Randy died this morning of complications from pancreatic cancer.
The CMU news story is
here

July 24th, 2008: The cancer is progressing

A biopsy last week revealed that the cancer has progresed further than
we had thought from recent PETscans. Since last week, Randy has also
taken a step down and is much sicker than he had been. He's now enrolled
in hospice. He's no longer able to post here so I'm a friend posting
on his behalf because we know that many folks are watching this space
for updates.

June 26th, 2008: Slow, but continued recovery

I continue to slowly recover. Chemotherapy has a cumulative effect, so it takes longer to recover the deeper one gets into this.

Our current thinking is that more chemotherapy may not be wise; at this point, almost all potential chemotherapies may potentially make me so weak/sick that even if they were to slow the tumor, it would not be clear it would be the right tradeoff.

We are currently narrowing down some immunuotherapy-based apporaches that would presumably come with little or no side effects. More news as that proceeds.

Today's box score:

Creatanine (kidney function): 2.2

CA19-9 (tumor marker): 1400

Blood Pressure: 120 / 70

Weight: 142

June 21: The Congressional Record

Back in the fall when I testified before Congress, representative Roybal-Allard hosted me,and she was also kind enough to have this very flattering entry put into the congressional record...

Health-wise, I continue to regain strength in the hopes of trying another treatment once I'm strong enough.

June 15, 2008: A Great Father's Day

We had a great day here at the Pausch household; the kids made matching tie-dye shirts for me and them (note! Tie-dye stays on skin quite a while!). I'll try to get a photo up shortly.

Health-wise, I'm slowly bouncing back from the last round of chemo. Last Thursday's PET scan showed that the cancer continues to grow, but is still more restrained in its rate of growth than it might be, which is good.

June 10th, 2008: A Letter from President Bush

I recently received a letter from President Bush. Carnegie Mellon checked, and it's for real. Click on the image to see a large version of the letter.

This is something I suspect will be good for my kids to see someday.

May 28th, 2008: Chemo works out poorly

Well, I ran 101 fever for three days, did a bunch of vomiting, and was too sick to really get out of bed for 5 or 6 days. Needless to say, that chemo isn't our winning combination. Back to the drawing board...

May 20th, 2008: Return to chemo

We tried a new regimen today: (eribitux + ironotecan). Blood pressure has now been undercontrol nicely and we figured I was strong enough to give it a try.

May 18th, 2008: A perfect day!

Everyone should have a day this perfect in their
lives. Carnegie Mellon flew Jai and me up to Pittsburgh
to attend graduation. I had the honor of giving the charge to the graduates at the end of the ceremony.
Even the weather cooperated to make it
a perfect day with the sun breaking through the rain clouds as the
ceremony started.
I also got to speak briefly to the SCS and ETC commencement ceremonies.
It was wonderful to see all of our old friends and colleagues and I
was very touched by the invitation.

My three minute address and dramatic ending ---------------->

May 13th, 2008: Strength slowly returning

I'm sorry I haven't posted much recently; there just hasn't been too much notable going on. Mostly, I'm resting and rebuilding strength. Today has been my best day in a while; I took at 2 hour nap in the afternoon, but other that that have been up and active all day.

Today's box score:

Creatanine (kidney function): 2.8

CA19-9 (tumor marker): 634

Blood Pressure: 135 / 85

May 10th, 2008: Vroom!

For Mother's Day, we managed to arrange to have Jai get away for a night in a local hotel, where she was able to sleep in until 9am; a truly rare treat for a mother of three little kids!

We also took a spin in a "kit car" of a 1965 Shelby Cobra.

May 2nd, 2008: Cancer spreads

Yesterday's PET scan showed that I have very tiny (5mm or less) metastases in my lungs and some lymph nodes in my chest. I also have some metastases in my peritoneum and retroperitoneum cavities (basically, inside my abdomen).

This is unfortunate, but we knew it would happen sooner or later, and we've been able to stave it off much longer than anticipated, so I'm very grateful for that.

My current strategy is to continue to recover from the heart and kidney failure, and once I'm strong enough, then we'll either do the SIR-Spheres or some systemic chemo, depending on the relative growth of the liver and non-liver tumors.

April 27, 2008: Still recouperating

I'm in the process of slowly getting my strength back. Once we have demonstarated we can keep the blood pressure down, then we can dial back on the blood pressure meds, which are causing a good part of the fatigure.

Several people have expressed concern about the tumor marker. True, it's going up. But by the time this is over, it'll probably be over 5,000, so don't worry too much just yet!

Today's box score:

Creatanine (kidney function): 3.1

CA19-9 (tumor marker): 404

Blood Pressure: 130 / 82

April 19, 2008: Recent Doctor visit and my health

For those of you scoring the game at home, see today's box score.

I'm recovering much faster this time from the congestive heart failure (practice makes perfect, I guess). I'm still hideously fatigued, but today I was out of bed most of the day.

Two of my favorite people, MR Kesley and Jessica Hodgins have been visiting, which is wonderful and has buoyed my spirits!

Today's box score:

Creatanine (kidney function): 3.2

CA19-9 (tumor marker): 295

Blood Pressure: 134 / 88

April 18: I only cared about the first three copies...

Hyperion sent me a nice plaque ... apparently the book we did (for which the credit goes to Jeff Zaslow), has become a #1 best seller.

Hyperion says they're about to have two million copies in print, but all I cared about was the first 3 copies.

April 16, 2008: In praise of good pill bottle design

On the left you can see the total number of medications I'm currently taking. Keeping all this straight is a nightmare.

I'm really impressed with Target's unique design (see right). The bottles stand on their caps, there's a large flat surface, and they make the font as large as will fit. This is a wonderful example of "design making the world a better place."

April 15: Chloe and Cindy Lou Hoo

Thanks to my friend Jack, who pointed out recently that Chloe and Cindy Lou Hoo appear to be separated at birth!

April 15, 2008: Heart Failure, Part Deux

E ck. Yesterday's visit to the cardiologist showed that I'm technically back in heart failure. My "ejection fraction" (basically, heart output) dropped back down to 30%.

The good news is that only 24 hours later, the medications they put me on have put my blood pressure back in the normal range, and the diuretics have caused me to drop 4 pounds of water weight; both of which were doubtless contributors. It wasn't serious enough to land me back in the hospital, and I'm hopeful we'll have this turned around pretty quickly. The major bummer is that the blood pressure meds make me fatigued.

I spent all day Thursday at the Univ. of Maryland, being seen by fantastic doctors. I am now qualified for this treatment.

Jai & I now need to decide how much longer I need to regain my strength before we might pursue this.

Oh, the picture here has nothing to do with the text; I just thought it was a great photo of Chloe!

April 11, 2008: Robin carries Olympic Torch!

Robin Luo, a fellow cancer patient (see below; she's the one who got "the elephant in the room") was an olympic torch carrier - how cool is that!

April 9, 2008: Getting Ready for Next Step

Well, I'm not quite back on the bike, but I'm healthy enough to travel and move forward with treatment. Tomorrow I'm spending the day at the University of Maryland being evaluted to see if I am a candidate for the SIR-Spheres treatment.

Basically, it's a process where a large number of tiny (thinner than human hair) spheres are irradiated with Yittrium-90 and then squirted into the artery that feeds the liver. They preferentially go towards tumors (counter-intuitive, but true), and both block blood flow to the tumors and irradiate them.

April 8, 2008: Book Launch, Media Craziness

The book went on sale today. Lots of media outlets ran stories, which is very nice of them.

Diane Sawyer is running a special tomorrow (Wednesday) night at 10pm on ABC. People who know what I'm really like will doubtless be throwing tomatoes at the screen ;-)

April 2, 2008: Getting back into the fight

For those of you familiar with boxing, I would describe the weeks since my heart & kidney failure to be a "standing eight count." I got knocked down pretty good and needed time to gather myself. Now I'm back on my feet; still a little wobbly, but ready to engage in the fight again.

Yesterday's CT and MRI scans showed that I've added a new, 11th tumor (small), and that a few of my original 10 tumors have grown, but only negligibly so. My biggest tumor is about 2.5cm in diameter. Given that I've been off chemo for six weeks, this was jumping-up-and-down good news, for two reasons:

1) It means the cancer has not grown like craxy, a big fear since stopping chemo.

2) Since all my tumors are in my liver, that means certain liver-specific treatments are possible.

I'm typing this from a recovery room; I just had a biopsy taken of my tumor tissue; that will be sent to TGEN in arizona, where they will run some tests to see if they can identify which chemotherapy drugs might be most effective on my particular tumors.

My next step will probably be embolization with theraspheres; a liver specific treatment that has a very low rate of side effects, and won't make me feel crappy like systemic chemo does.

The fight is rejoined; I've got much more energy now -- I hope to be back on the bike in a week or so.

March 30, 2008: Pancreatic Cancer does what Pol Pot couldn't.

Today's news brought the sad report that Dith Pran, one of the great heros of all time, and the inspiration behind the film The Killing Fields, just died from pancreatic cancer. Details are in this story.

Pol Pot's Khmer Rouge regime failed to kill Mr. Pran.

It took pancreatic cancer only three months from diagnosis.

March 29 2008: Feeling better

I'm definitely having more energy; spending less time in bed each day, and feeling more "human" overall. My doctor says I'm strong enough for us to start moving on tests and my next steps in treatment, probably in the next 2 weeks. Good thing, too: my CA19-9 blood marker, which in my case is strongly correlated with tumor activity, has been slowly rising:

recent CA19-9 numbers:
2/29: 94
3/14: 103
3/21: 170
3/27: 216

If my tumors were a stock, they'd have a "buy" rating ;-)

March 26 2008: Slow going, but encouraging news

The last few weeks have been tough; I've been in bed most of each day, having to ration my energy, which is very unnatural for me. Total exhaustion is very frustrating. However, I am starting to, very slowly, gain more energy each day.

Tuesday's trip to the cardiologist yielded great news: my echocardiogram showed that my heart function is definitely returning: my "ejection fraction" (measure of blood ejection by the heart) was at its low point 25%; it's now up to at least 45%, and "normal" is 55 to 70 percent. Also, my cardiologist says a lot of the fatigue may be caused by one of my blood pressure medications (coreg), and next week they will probably swap that out for another drug, now that I'm doing better.

On the kidney front, my nephrologist is extermely encouraged - for those of you scoring the game at home, my creatanine level (peaked at 3.9) is now down to 3.1, and he says that's a very stong indicator my kidney function is going to return.

The only bad news is that the tumors have apparently decided they've been chivalrous enough; my CA19-9 went up from 103 to 170; while not definitive, it's a strong indicator that they are on the move. So I need to hurry up and get healthy enough for our next round of treatment.

March 25 2008: Time Management Talk gets traction

People who know me know that the talk that I'm actually most proud of is the talk I've given over the years on "Time Management."

With great thanks to Gabe Robins, I'm thrilled to report that if you type "time management" into Google, the video of that talk is now the 6th result! (By the way, I've made that video available under a creative commons license, so anybody can show it for free, so long as they give attribution).

March 19, 2008: Very slow recovery

Well, except for the day to go to Congress, I've now been resting at home for more than a week. Spending almost all day in bed is hardly my normal state, but the exhaustion is very real.

I've learned a lot about diuretics: drugs that force water out of the body. Part of why my organs (heart/kidney) failed is that fluid built up in my body. With aggressive diuretics, we've forced 20 pounds out of my body in the last 12 days. Wow. I feel like a crushed grape!

The doctors are very optimistic my heart will return to something like 80-90% of its original capacity (which is fine; I went into this with great heart function). The biggest question is whether my kidneys will recover and start working on their own. We just stopped the diuretics, to see if my kidneys will "kick in" on their own. It will take probably 2 weeks to know for sure. For those of you scoring the game at home, my creatanine level peaked at 3.9, but is down to 3.4 - my nephrologist (who is awesome), says that is a very encouraging sign.

So I rest, and I rest, and I rest. The really good news is that - at least based on blood markers - the tumors are being very chivalrous and not taking advantage of this opportunity to run wild, before I'm strong enough to fight back. My CA19-9 was 103 last Friday, which is only up a tiny bit from my last round of chemo.

March 13, 2008: Out of Hospital, on to Congress....

I was discharged from the hospital on Monday afternoon. Great thanks to my personal angel, MR Kelsey, who came down from Pittsburgh to be with me. MR, you are awesome.

I'm feeling MUCH better since the tap (they pulled out 1.4 liters of fluid from my right lung). There's a similar amount of fluid in my left lung, but we'll try to suck that out with diuretics, rather than do another tap, which has small, but real, risks.

After consulting with my doctors, I got permission to travel today to Washington, DC, to testify before congress about the need for more funding for pancreatic cancer research. I think it went pretty well; the staffers tell me that when the congresspeople put down their blackberries and listen, it's a very good sign, and that certainly happened.

Oh, and in the "never a dull moment" category, we had a pretty serious car accident on the drive up, but everybody was okay. How ironic it would have been to go that way!

Great thanks to Julie Fleshman and everybody else at PanCAN (www.pancan.org) who did all the work to make my testimony possible. Great thanks also to Jack Sheriff, my long-term best friend, who was able to come and provide support; I'm still a little wobbly from the heart/kidney issues, but with everybody's help, I got through it, and I'm hoping to continue to heal up over the next few weeks.

March 8, 2008: Hospitalized

On Thursday Jai & I met with nephrologist (kidney doctor) Thomas Whelan, who is terrific. Based on lab work and my symptoms, he recommended that we use a combination of diuretics and a "tap" to get rid of the fluid around my lugs. Both for reasons of speed and safety, he recommended I get admitted to the hospital and do this in-patient, so I went into the hospital Thursday night.

Although we're still sleuthing down exactly what caused it, we believe that the chemo drugs ended up putting a huge strain on both my heart and kidneys. That led to the buildup of fluid around my lungs. Friday morning they did the "tap": - inserting a needle in my back, between my ribs, and piercing the outer lung sac, but not the lung itself. They then siphoned off more than a quart of fluid, which lab tests showed was unremarkable. Within an hour, my breathing was feeling normal (instead of the labored, shallow breathing I'd been doing). Most importantly, I could lay flat and really sleep for the first time in 2 weeks. It felt incredibly good.

My left lung also has about a quart of fluid, but we'll get that out with diuretics rather than do another needle stick. It's a pretty safe procedure, but if it can be avoided, they prefer less invasive approaches.

They are tweaking the high blood pressure medicines and the diuretics, in order to find a good combination. The doctors are fairly confident there isn't any long-term damage to my heart. That's less clear with my kidneys, but I can live okay with them in their current state. The big problem was when both the heart and kidneys were getting hammered, which let to the fluid build-up.

I'll probably leave the hospital tomorrow (Sunday), or Monday. It will take about a week to get me really robust again, but I already feel SO much better now that they've tapped the fluid. The fluid tap, by the way, works almost identically to a beer keg, in terms of the physics!

The short term crisis is under control. The longer term strategy of how to continue treatment of the cancer, given my new constraints, is something I'll have to figure out this week.

March 5, 2008: Good News and Bad News

The good news is that the tumors appear to still be basically held in check.

The bad news is that the side effects of the chemo drugs have become too toxic. My kidneys are now performing at well under 50% efficiency (Creatanine is 3.4, and BUN is 54, for those of you scoring the game at home). My blood pressure has soared up to 200 over 100. . I may technically have "high output congestive heart failure," but that's not nearly as bad as it sounds.

The painful part is that we think my abdominal cavity has started to fill with fluid, a side effect of the kidney inefficiency and high blood pressure. . That particularly stinks because the fluid pushes on lungs and heart. I can't sleep (or breathe clearly) while lying down; I have to sit up and try to sleep that way. And I get totally out of breath after a flight of stairs.

So we're doing a bunch of things to address these issues:
- we're stopping all chemo
- I'm now on high blood pressure medication
- I'm taking a diuretic that is supposed to get my body to empty itself of fluids, so that my body (in theory) starts to absorb back the fluid in my cavity and start to urinate it out over time.
- I'm seeing a nephrologist (kidney specialist) tomorrow.
- Yesterday I got a blood transfusion, which greatly helped my low red blood cell count and is giving me more energy.

This is a setback, but hopefully a small one. However, if the damage the chemo drugs did to my kidneys is permanent, that would be really, really bad.

More news as it develops.

March 1, 2008: The Median isn't the Message

Stephen Jay Gould wrote a brilliant essay I think most cancer patients would benefit from. It's only a few pages, and it's here.

Feb 15: Six months later .... and still alive & healthy

Today is a pretty important day. It was August 15th, 2007, when I was told I likely had "three to six months of good health left."

Today is six months from that day. Just to prove I'm still alive, here I am, holding today's New York Times!

I rode my bike today; the cumulative effects of the chemotherapy are hurting my stamina some, but I bet I can still run a quarter mile faster than most Americans.

The doctors weren't wrong; they always said that if the palliative chemo worked, I'd buy more time, but that it was a long shot. And the doctors have done a brilliant job of tweaking my regimen to help my odds. How much longer this will work is hard to know, but I'm going to keep having fun every day I have left, no matter how many or how few of them I get.

Feb 11: The Elephant in the Room

At "The Last Lecture," I brought out a bunch of stuffed animals and said anyone in the audience who wanted one should grab one after the talk.

I don't know where the others ended up, but a very brave Carnegie Mellon senior named Robin Luo grabbed the stuffed elephant; she sent me this photo recently.

Robin has been battling cancer herself; and during my tough times in Houston, we exchanged frequent emails. She's doing great, and has become quite the advocate, as well: check out the relay for life to see how you can help.

It is somehow quite fitting that a compatriot with cancer got "the elephant in the room."

Feb 9: Tumors start growing, but we fight back

My CT scan in the first week of January showed the beginning of "creeping growth" of the tumors in my liver. This indicated that my palliative chemo had begun to fail. A huge bummer.

Our counter-measure was to add the drug Avastin (making my regimen Gemcitabine+Tarceva+Avastin). this was a long shot, but since Avastin doesn't have bad side effects, we figured we'd try that first.

And it worked!

My February 5 scans showed no growth (and maybe even a little shrinkage) in the preceding month. I and my docs were all giddy that the long shot worked.

The obvious question: how long will it work? Nobody knows, but I'll ride it until it stops working; with luck I can buy another few months. Meanwhile, I've identified the "next steps" I'll take after that, all of which are more toxic in terms of side effects. So I'm ready and loaded for bear when the time comes.

The only downsides are

1) my kidney function seem to be weakening; not dangerous yet, but moving in a bad direction. It's possible the Avastin is the culprit, but it may be a combination of Avastin, gemcitabine, and the IV contrast in all the monthly CT scans (most people are only scanned every two months). So we'll be watching my kidneys carefully.

2) My last chemo produced a 3 day fever, spiking at 103, plus some nausea.

These are small prices to pay ... any day you have tumors in your liver and they don't get bigger is a good day!

Pancreatic Cancer Action Network Advocacy Day

March 10th and 11th, the Pancreatic Cancer Action Network will be having advocacy days in Washington, DC.

I plan to be there. Perhaps I can lead a cheer or two at the rally.... how about:

two...four...six...eight .... with pancreatic cancer you emaciate!

Feb 1: How am I Feeling?

This is the question I'm most commonly asked.. The short version is: the tumors are still to small to be felt, or to have any effect on my health.

So what I'm feeling is due to the chemotherapy. Some days I'm tired, and some days I have flu-like symptoms (chills, muscle and joint aches). And my GI tract is still somewhat of a mess; I eat 4,000 calories a day, just to maintain weight. I occasionally have mild nausea, but it's rare and really mild.

In the last month, the new side effect is neuropathy: numbness in the fingers and toes. It's been getting worse; I can still touch-type, but I make tons more mistakes. And it's getting hard to find things in my pockets, since I'm losing the sense of touch; I can mostly just feel pressure.

All in all, a small price to pay for walking around!

Jan 28: Trip to Orlando!!

Jai & I just took a long weekend in Orlando with Dylan and Logan (Chloe's really too young, so she stayed here with Jai's relatives).

Highlights of the trip:

- Logan asking to see "Shampoo, the Killer Whale"

- Logan jumping a barricade and sprinting into a parade, and being "taken down" by two security guards while Jai madly gave chase.

- Meeting Mickey.

- Winning stuffed animals. I bagged a snake, and Dylan and Logan won their first "all by myself" animals! (Turns out they're naturals at the squirt guns).

- Riding in the nose cone of the monorail; the driver even gave Dylan and Logan co-pilot's licenses!

Jan 23: Lobbying Congress

The Pancreatic Cancer Action Network launched a major initiative called Raise the Cure, attempting to get Congress to allocate more research funding for pancreatic cancer.

I spent the day on the hill, meeting with senators and members of the house ("Hi, I'm Randy, and I'll be your 'Michael J. Fox' for the day...")

Here we are with Steny H. Hoyer , the House majority leader. Next to me is PanCAN’s Megan Gordon Don, director of government affairs, and farthest from me is Julie Fleshman, PanCAN's president and CEO.

Jan15: The Book is Done!

Kudos to Jeff Zaslow, the world's fastest writer. I am proud to say that the book "The Last Lecture" is now done!

I'm even prouder to say that we accomplished this with the major constraint that it take little or no time away from family (see "How to Write a Book on an Bike," below).

Jeff and I are very proud of how it has turned out. It's 61 chapters in 206 pages. There are 18 photographs, 1 bar chart, and (for all my mathematical friends), one equation.

I am particularly proud that I negotiated to get the words "Carnegie Mellon" on the front cover! (click on image to see it larger).

Kau-Fu Lee sent me the following; if you download and run this .exe, it's a sweet animation from a bunch of chinese students thanking me for the lecture.

It's a small world, after all.

Jim Valvano at the 1993 ESPYs

Several people were kind enough to point me to this very inspirational piece by Jim Valvano, who - like me - did it knowing he was a terminal cancer patient. I personally love the moment where they try to tell him he only has 30 seconds left! Click here to view the video.

Dec 31: Dylan turns six

For most people, Dec 31 is New Year's Eve. In our family, it's Dylan's birthday. Today was a great one; Dylan spent the morning at the aquarium seeing all sorts of animals, then spent the afternoon with Daddy and his cousin Hannah, watching a movie. Then, we all got together at Red Robin for dinner, including balloons.

Dylan & I went to one of those photobooths where they take your picture and then process it to look like a human did it in pastels. The best part is there's a video where they make it look like a human is really drawing it - every so often, he says "oops!" and erases a part and redoes it - Dylan thought that was hysterical! Here's the final product

Dec 25: Christmas at the Pausch Houseold

Christmas is a wonderful holiday. It's even more wonderful when you weren't sure you would be around for it.

Dec 23: How long will the palliative chemo work?

A natural question is "how long will the palliative chemo (gemcitabine+tarceva) continue to work, holding my tumors basically stable in size?" There is some data on the roughly 10-15% of metastatic pancreatic cancer patients where gemcitabine works for them.

I talked with my oncologists, and read some journal articles. There's no single answer (it's obviously a bell shaped curve), but the best guess, based on available data, is that my tumors will "hold" for another 2-4 months from today.

That's really cool. Jai and I call this "bonus time."

In terms of medical treatment, the general consensus seems to be "keep doing what's working." Once it stops working, there are a number of things to try, but they're all even longer shots than the thing we tried first, which only works for 10-15% of patients.

Dec 10: How to Write a Book on a Bike

Jai wanted me to write a book, but that begged the question of how to do that without taking time from being with the family. The solution? Jeff Zaslow is actually doing the heavy lifting of creating the prose (and dang, is he a good writer), but the deal is that he and I talk one hour each day, while I'm exercising on my bike.

That way, I can get all my stories and anecdotes to a real writer (I stink at writing, anyway), without taking any time from family.

Dec 7 : Palliative Chemo Continues to Work!

The palliative chemotherapy (gemcitabine + tarceva) is still working. My december 7th CT scan was basically a photocopy of my Nov 8th scan; the tumors have not grown at all. My CA19-9 (for those of you "scoring the game at home" dropped from 208 on Aug 14th to 59 on Nov 2, and then 64 on Nov 26th. This is all really good news.

My local oncologist, Dr. Michael Lee (who is spectacular, and is himself a cancer survivor), tells me that my response, on a scale of 1-to-10, is a 10.

I need to be clear: this is not a cure, and it won't work for long. "Winning" right now means buys extra months, not years. But I'm thrilled to have this "bonus time"!!! And I will be in good health for Christmas.

I will probably be adding Avastin to my cocktail soon.. It's been a wonder drug for lots of metastatic cancers, but the large trials don't really indicate it makes much of a difference for pancreatic. However, several doctors have anecdotal stories of a single "fluke" patient who lives 12 or 18 months on it, so I'm inclined to try to be that fluke patient.

I suffer small side effects from the chemo: I have 1-2 days/week (surprisingly, it starts about 48 hours after the IV) where I feel mild nausea and some substantial fatigue. We switched my "chemo day" from Fridays to Mondays so that my weakest day occurs during the week, when we have Rachael to help Jai out with the kids. Sometimes, I can't feel my fingers or toes, and I've had some infrequent, but very painful intestinal cramping, but all-in-all, "a very small price to pay for walkin' around," as we in the cancer business say. My red blood cell counts are a little down, but I can ride a bike an hour each day, and I can fully play with the kids and enjoy my life.

Meanwhile, I'm frantically examining "plan B" treatments when the gemcitabine+tarceva stops working. Frankly, there aren't any silver bullets out there, but I'll give it my best shot. Leading candidates are some vaccine trials about to open up at Johns Hopkins, and TGEN (www.tgen.org), which does some customized therapies. I have about 30 other things I'm investigating, but those are the current leaders.

Dec 1: Scuba diving!

I'm definitely in the running for "healthiest dying man in America." This photo was taken at 105 feet off the Cayman islands on Dec 1st.

When I asked my oncologist if I could go scuba diving, he thought for a while and said, "Medically, I can't think of any reason you can't .... but I have to admit, it's not a question that comes up very often for metastatic pancreatic cancer patients!"

Kudos to my dive buddies, Steve, Jack, and Scott, who kept very careful watch over me in the water.

Star Trek!!!

This is, by far, the coolest thing (okay, #2 behind the palliative chemo working). JJ Abrams (Hollywood producer/director who did the TV series "Lost," the movie "Mission Impossible III" and a bunch of other stuff) emailed me, out of the blue:

JJ Abrams wrote:
> Dear Randy --
>
> Hi there -- I'm JJ Abrams, director of the new Star Trek movie.
>
> I read about you and your condition, and ALSO your affinity for things
> Trek.
>
> So, I just wanted to put the invitation out there -- that if you had
> any desire to be in the film (can't promise you role as CAPTAIN,
> but... we could do SOMETHING!), it would be my honor and pleasure.
>
> The last thing I want to do is intrude, so feel free not to reply --
> but I wanted to make sure you knew that, if you are willing and able,
> the door is wide open.
>
> I hope that your treatments are going well and that we get to meet one
> day.
>
> Best,
>
> JJ

Naturally, I presumed this was one of my friends, playing a prank. But after a little sleuthing, it was clear it was for real. Jai & I hopped a plane to LA, where I got a custom-made Star Trek uniform and my own station on the bridge, where I had lots of buttons and controls. I even got a LINE!!!!

In addition to publicly thanking JJ Abrams, I just wanted to say what an incredibly egoless and cool guy he was. We chatted a little bit between takes, and he is so tech-savvy (and I'm not saying that *just* because he knew all about Alice!). Anyway, it was a truly magical experience. Speaking of Magic, I got to fulfill a long-standing wish of taking Jai to the Magic Castle on that trip, courtesy of Peter Farquar. MK Haley, who is herself quite magical, joined Peter and his wife and Jai & me for an incredible evening.

the "Star Trek" movie will be in theaters December 2008. Don't blink or you'll miss me, but at some point a guy walked across the bridge and says "Captain, we have visual!"

I'd *love* to show you my costume (which they let me keep), but I promised JJ Abrams "no photos". They're trying to keep things a secret; in fact, even on the Paramount lot, you have to walk around in a trenchcoat if you're in a Star Trek costume. It's kind of like being at a flasher's convention!

Oh, and if you think I'm making this up, here's a copy of my check from Paramount (they had to pay me due to some union rules or some such... I'll obviously be donating this to charity).

Nov 29: Settling into our New Lives

As you all know, we moved to Virginia immediately upon my terminal diagnosis; the goal being to have our family settled as soon as possible. That strategy has been really validated. Life here is logistically much easier (warmer weather, living on a a cul-de-sac in suburbia). We miss everyone back in Pittsburgh, but our new neighbors have welcomed us warmly and the kids are thriving, which was always our main concern. Being so close to Jai's family is the huge win we knew it would be.

Dylan is loving kindergarten and taking Karate classes. Logan is potty trained (the pure pride when he says "I used the Potty all by myself!" is pure Norman Rockwell). Chloe says about 100 words, most of which melt my heart. Unfortunately, she recently learned "no no no no no," which she treats as one word. Jai is redecorating (i.e. "nesting") in our new home. We have a wonderful nanny Rachel, and Laura from Pittsburgh comes down to help out, which has made it possible for us to travel occasionally.

We are starting to look into our options regarding Hospice care when the time comes, but Jai & I are very pleased with having gotten the kids into their new routine and so settled in advance of the coming storm.

Nov 28: Leveraging Fame for Good

Jai & I have been trying to see how we can use my D-list celebrity (apologies to Kathy Griffin) for good. I'm working with both the Pancreatic Cancer Action Network (PanCAN) and the Lustgarten Foundation, doing things like videotaping public service announcements and meeting with lawmakers up in Washington, DC. One reason pancreatic cancer is such an "orphan" disease is that we don't have many long-term survivors to lead marches on Washington. So I'm trying to sort of become the "Michael J. Fox of pancreatic cancer."

Nov 27, Time Management Lecture for Posterity

The lecture I thought I would be famous for at the end of my career was the talk I give occasionally on "Time Management." I was able to travel to the University of Virginia and give it today. Great thanks to Gabe Robins for his herculean efforts.

I spoke in Old Cabell Hall, which is an amazing theater; 180 degree spread and very vertical; it seats 850 and you feel like you can touch any of them at arm's length. It was important for me to give this lecture and have it properly videotaped: now that we've seen how effective Google Video is at allowing a talk to be widely viewed, I'd like for the information in this talk to be freely available for anyone who might benefit. Plus, it was great to see my old colleagues, and my family was able to converge and we all got together, so it was just a great day.

When Jeff Zaslow's column appeared in the Wall Street Journal (WSJ), about a dozen publishers emailed me, asked if I would be willing to write a book based on it. (I found this laughable, since at the time the palliative chemo was not yet working, and I thought I was down to about 6 weeks of good health). When the palliative chemo started working and we had some breathing room, I mentioned this to Jai, and she told me she wanted to do it. She was, in fact, quite emphatic. We had always talked about my "writing the manual" for her and the kids in my remaining time, and Jai felt that if it were a "real" project, I might take it much more seriously.

Jeff Zaslow from the WSJ, who is a terrific writer, was willing to be my partner and do the heavy lifting, so the deal we struck is that we would do the book together as partners, but he would write it (my colleagues from the Alice team are smiling, as they're familiar with this model of my "authoring" a book). The wonderful part is that this takes almost no time from the family: each day, I ride my bike for an hour and talk with Jeff on the cellphone. The process has already been wonderful; he's great at dragging stuff out of me I would never have dredged by myself.

I've grown a little disappointed with the news media: there were early reports that Jeff was somehow "cashing in" on my story, which is simply not true. Neither he nor I were "cashing in," for that matter (the book getting a large advance-on-royalties took us both by surprise) - but I thought it was particularly unfair that some early stories made it look like he was somehow doing this by himself.

I am thrilled that Hyperion, the publishing arm of Disney, will be publishing the book. Somehow that just feel right, and they've been great to work with, in terms of being very respectful of my circumstances. Here's the press release about the book.

Nov 21 Lions and Tigers and Awards, Oh, My!

In the last month, I've received a number of professional awards. I would be disingenuous if I didn't admit that I don't feel these are really deserved; after all, there's the "give the dying guy an award" factor. However, they all reflect favorably on Carnegie Mellon and I accept them all gratefully. As they say, "Dying is a good career move." :-)

Specifically,

ACM SIGCSE Outstanding Educator Award: this is wonderful because it comes with a keynote address where I can talk about Alice at the annual conference. It's March 12. Through the wonders of videotape, I'll give that talk "Dead or Alive" ;-)

CHI Academy. Like the ACM Fellow, playing a little over my head, but I'm very honored.

Alice Merit Badge

Alice Merit badge for Girl Scouts, made by a single troupe more as a lark than anything else. But dang, this really made my day!

Nov 19: Randy Pausch Day in Pittsburgh!

November 19th was declared "Randy Pausch Day" by the city of Pittsburgh. Randy Bryant was kind enough to accept the award in person, and they phoned me and said nice things about how I had shown the world how great Carnegie Mellon and Pittsburgh are.

What Does this Vulture know?

On the way to the Police concert, we stopped in Williamsburg. Jai thought it was hysterical that a turkey vulture followed me around for several hours during a walk.

He's in the tree in the lower picture.

Nov 6, 2007: Meeting "The Police"

Jai &I took our first kidless vacation in a long time.

We went on a three day, three night adventure to Williamsburg and Charlottesville. At UVa, we saw "The Police" perform. The concert is truly terrific.

Jai is a huge Police fan, so imagine her surprise when we were whisked backstage to get to meet the band! Great thanks to Gabe Robins and others at UVa who made this possible.

Oct 31, 2007 : Happy Halloween!!

What an "Incredible" family we are!!

Medical update: Things are going well. I get chemotherapy once a week, and it has some side effects but has not been dramatically affecting my super powers.

Oct 19 , 2007: Palliative Chemo is WORKING!!!!

On Oct 1st, I had a CT-scan, and a follow-up PET-CT scan on Oct 13th. Both confirmed that we are willing: The tumors in my spleen are now gone, and the dozen or so tumors in my liver are all either stable or slightly smaller.

This happens in something like 15% of the cases of people who get gemcitabine+tarceva. It's a lottery, and I'm a winner. Statistically, this means I probably just bought an extra 2-4 months of good health. Said another way, I may have just doubled my life expectancy - you try to do that!

Most importantly, that buys me time to pursue "plan B" - the gemcitabine+tarceva will not last forever, and we want to have the next thing cued up and ready to go.

I am currently looking into other chemotherapies, some vaccination approaches (including a custom vaccine that would be made from my own cancer cells), and some super-secret stuff I'm not at liberty to talk about. But it is safe to say that I am thrilled with the quality of medical care I'm receiving and that I feel like I'm getting the cutting edge stuff that my species can provide for me.

Having said that, "winning" means buying time; I will always hold out hope that a miracle cure is developed that would give me a normal life span, but right now we're fighting to stay alive a few more months at a time.,

My quality of life is very good: I ride my bike an hour a day, play as much as I want with my kids, and enjoy being married to the most wonderful woman in the world. I have intermittent gut pain, some fatigue, and some mild "flu like symptoms" each week, approximately 24-72 hours after the chemo, but it's manageable. Small price to pay for walking around.

Sept 4 , 2007: Dolphin Swim with Dylan

I'm sorry it took me so long to post this: I've obviously been a little busy. Shortly after my terminal diagnosis, I knew that one of my biggest priorities was to create memories for my children.

Chloe and Logan are both so young that it's likely they'll have no direct memories of me. Dylan is the oldest, and at 5 (turns 6 in December), his memories are likely to be fuzzy. Hence the engineering question: What would make for the sharpest, most visceral memory, esp. for a kid who loves animals? Answer: go for a Dolphin Swim!'

Dylan and I spent a glorious 4 day, 3 night "Daddy and Dylan" vacation in Orlando, where we visited the Magic Kingdom and swam with Dolphins at Discovery Cove (both places were absolutely incredible to us, providing admission, special opportunities, and most importantly, photographers to help provide images that will reinforce the memories. I have an incredible number of photos, but here are a few that I hope Dylan will cherish after I'm gone....

August 31 , 2007: Palliative Chemo begins

Yesterday I got my first round of Gemcitabine. We'll add Tarceva next week. In the first 36 hours, I've experienced zero side effects (yeah!). And tomorrow Dylan & I are taking a 3 day "Dylan and Daddy trip" to Florida to do a dolphin swim and see Mickey Mouse!

Aug 26th, 2007: "It was the best of times, it was the worst of times."

The best of times, in that about three weeks ago, my health really, really came back. I've been lifting weights 3 times a week, and I ride my bicycle an hour each morning, at about the same pace I did before the cancer struck. I once again bounce while walking down the hallway, and as you can see, I can lift and play with all three kids with vigor. (these pictures taken yesterday).

It is also the worst of times; a recent CT scan showed that there are 10 tumors in my liver, and my spleen is also peppered with small tumors. The doctors say that it is one of the most aggressive recurrences they have ever seen. The doctors are quick to point out they're very bad at predicting "how much time," but the consensus seems to be that I have 3-6 months of relatively good health. After that, it's hard to say how rapid a decline, and it's not a particularly pretty way to go. As we have known from the beginning, there is no effective treatment at this point; I'll go on palliative chemo to try to buy time; that works for 15%-20% of the cases, but only buys another few months. We have confirmed the CT scan diagnosis via blood markers and a needle biopsy; the diagnosis is undeniable.

So What Happens Now?

My wife, Jai, and I have had a long time to consider this possibility, and we believe it will be best for my wife and our children to be near family in Virginia, just south of Norfolk. Our plan is to head down over Labor Day weekend, so Dylan can start Kindergarten there Sept 4th. We can't close on a house that fast, but we will rent a beach house nearby as interim housing.

This is obviously not how I wanted things to turn out, but my wife and I have no regrets; we did everything I could to maximize my odds. And we want to thank everyone who has so graciously helped us.

The really weird part of all this is that I'm not depressed. I'm not in denial (I assure you, I am fully aware of what is going to happen), nor am I whistling in the dark, but after having felt crappy and sick for 11 months, to finally be fully healthy again is so exhilarating that it's a wonderful emotional buoy. So I am going to enjoy each day very fully, and play hard with my kids until I can't.

I apologize to those of you I wasn't able to share this news with in person. Since many people have asked me the same questions, I have taken the liberty of answering them straightforwardly here:

What will happen to the Entertainment Technology Center (etc.cmu.edu)?

I actually stepped down from the ETC in January of 2006, and Don Marinelli has been solely in charge since then, so there's absolutely no impact there.

I have been the public face of the project for a long time, but the truth is that it had already grown to be a collaboration between several universities, with four or five main PIs. The Alice team is fully committed to the project, and to releasing Alice v3.0 (including teaching with Java and using the Sims characters) in 2008. I have met with Peter Lee, Dan Siewiorek, Randy Bryant, and Jared Cohon, all of whom have expressed how committed Carnegie Mellon is to ensuring the Alice project continues smoothly.

Are you leaving Pittsburgh and Carnegie Mellon for good?

Absolutely not. We are relocating the family quickly so we can start Dylan on the first day of Kindergarten, but I will be making trips back to Carnegie Mellon, and I am on email and reachable by phone. In fact, I'm scheduled to give a talk at Carnegie Mellon on Sept 18th.

What should we not do?

The experts have counseled us that we should not yet tell our children, so please keep that in mind if you see us in person, leave messages on our answering machine, etc.

I want to close by once again thanking everyone at Carnegie Mellon, our church, and our friends and family, who have been so wonderful to us. We are very grateful, and we are sorry this story doesn't have a happier ending.

July 23, 2007: Done with Johns Hopkins Vaccine

On Monday, I got the last dose of the vaccine at Johns Hopkins. Just like the previous two inoculations, I got six injections (two per thigh and two on my left arm), and they have swelled up like massive bee stings (8 inch wide welts). But no real pain; just a little itching. I'll go back in every six months for a booster shot, but that's a long ways off.

Interestingly, this marks the last thing I can do to help myself, which is a little unnerving. I'm channeling that anxiety into starting to hit the gym with real vigor - building my body up in case there are more surgeries or chemo down the road....

July 9, 2007: The Folks who are keeping me alive

I thought you might like to see some photos of the folks who are working overtime to keep me alive. Here is my surgeon, Dr. Herb Zeh. He has performed hundreds of Whipple surgeries, and based on my experience, really knows what he's doing. Just as important, he gave me his email and cellphone info, and said to call him anytime, which he's honored.

In addition to surgery, he conducts research on vaccine-based approaches, which could really make a difference: to support that research, please contact Kambra McConnel in the Development Department for the University of Pittsburgh Cancer Institute at (412) 623-4700 or email her at mcconnelk@upmc.edu . Donations also may be made payable to “UPCI/Pancreatic Cancer Research/Liver Pancreas Institute” (in the “memo” section of the check, if applicable, please note that your gift is given in my honor and for support of Dr. Zeh’s research) and mailed to: Development Dept., UPMC Cancer Pavilion, Suite 1B, 5150 Centre Avenue, Pittsburgh PA 15232 .

July 9, 2007: The Folks who are keeping me alive, part II

This is Dr. Robert Wolff, my primary oncologist and the person I met with regularly at MD Anderson. He also responds to email, and has the wonderful property that he doesn't sugar-coat anything. His medical experience mitigating side-effects and helping provide emotional perspective on the whole experience were invaluable.

(My five year old was very curious "Why Dr. Wolff wasn't an animal doctor. :-)

June 28 , 2007: Second Round of Johns Hopkins vaccine

Yesterday I received the second round of the Johns Hopkins vaccine. No drama, no pain; just six needle sticks that are slowly growing into 8-inch across painless welts on my arms and legs - kinda cool, actually. Doesn't hurt a bit.

June 6 , 2007: Enough emotional roller coasters; how 'bout real ones!

After all the recent emotional roller coaster rides, we decided it was time for some real ones, so off we went to Kennywood, Pittsburgh's classic roller coaster park. Today was special because it was the first roller coaster ride for our middle child, Logan (2 1/2 years old).

Of course, you can't really see his face in this picture, as he's (naturally) got his hands in the air.

One of my quirkier hobbies is winning stuffed animals at amusement parks, and it was comforting to see the cancer hasn't diminished my skills too much.

In answer to your next two questions:

1) By tossing a softball into a milk can

2) It took four tries, at $2 a try.

June 1 , 2007: It's a Cyst! And I get the vaccine...

Yesterday's MRI confirmed that what they had seen on the CT scan (see: Dodging Bullets, below) was definitely a cyst. (The MRI also showed that the other small lesion was highly unlikely to be cancerous). Whew!! I got the vaccine yesterday: six injections (two per leg, and two on my left arm), and a small carving of flesh for a biopsy on my right arm, big enough to require two stitches.. No significant pain or side effects. I go back once a day for 4 days for them to draw blood to measure how the vaccine is being absorbed. My Mom lives near Johns Hopkins and our entire family is visiting this weekend. The Johns Hopkins folks have been amazingly accommodating. Barbara Biedrzycki, the researcher, is coming into work on Sunday so I don't have to stay all next week. I have met so many wonderful people on this journey.

May 30, 2007: Dodging Bullets

Yesterday I went to qualify for the Johns Hopkins Vaccine. I knew this involved another CT scan, which is always a chance to get bad news. Only this time I actually got bad news. For details, click here. (it's a good story).

Fortunately, this ended up being yet another false positive. These moments (there were two in Houston), are probably even harder than the chemo and radiation. As I said to my wife, Jai, I don't know how many more bullets I can dodge...

This delays my starting on the vaccine by a few days, but it also reminds me how much I value every day with my family.

May 25, 2007: I guess the stitches are holding...

My lovely wife Jai and I just spent 48 hours, sans kids, celebrating our 7th wedding anniversary at Nemacolin, where they have a zip line.

I sent a copy of this photo to my surgeon, with the tagline "I guess the stiches are holding up okay"...

May 22, 2007: Gained enough weight to wear my wedding ring again!

When this all began, I was 182 pounds. At my low point, I was down to 139, a 43-pound loss. One of the most depressing things about this was that I had to stop wearing my wedding ring, as it kept falling off and I was afraid I'd lose it. I'm now back up to 168 (and I really only want to get back to 175, not 182), and my wedding ring stays on again - yeah!

May 15, 2007: My life as a coin toss...

To the best I can know, my odds of 5-year survival are 45% , so I often refer to myself as a "coin toss." A good friend of mine, Peter Farquar (who is the only person I know who had a cooler Sabbatical than the one I did at Walt Disney Imagineering), is a magician. He sent me the following, with a note that said "Remember to CALL HEADS!" Boy, did that make my day!

Press the Green Play Button to see the video...

May 6, 2007: Playing Flag Football!?!?!

Six days after being unhooked from the chemo, I was back on the field with my rec-league flag football team. First play of the game, I caught a 25-year pass over the middle.

Granted, I was sucking wind the whole game, but damn it's good to be back on the field.

May 4, 2007: DONE WITH TREATMENT!!!!

On Monday, I completed my chemotherapy! They removed my PICC line, and it feels so good to have it gone! My family had a great celebration for me: here are the boys with the balloons. Chloe celebrated by taking some of her first steps! I have started exercising again, starting with bike riding. I have no stamina, but that will come back with time. My last CT scan was clear, and my CA19-9 is 19, well within the normal range. Meaning that - for now - there's no detectable sign of cancer in my body. I am still a looooong way from winning the battle, but every day I don't lose is a day closer to achieving long-term victory.

I'm still somewhat weakened by the six months of chemo, but by June 1, I should be back to full health. I have already regained 18 of the 43 pounds I had lost.

My long-term odds remain 45%, but I am highly optimistic that I am going to win the coin toss.

One more Rabbit out of the Hat...

April 18, 2007...

The Johns Hopkins Vaccine...

When I first looked into my treatment options last September, there
were two clear possible choices: the Virginia Mason protocol, and a
vaccine developed by Johns Hopkins. I went with Virginia Mason because
they were producing better results, and had done so on a larger number
of people.

However, I have just learned that Johns Hopkins will allow me to
receive the vaccine after doing the Virginia Mason protocol. (sort of "have your cake, and eat it, too"). Since the vaccine uses a different
approach than the chemoradiation, there's some reason to believe that
doing both treatments will help my odds. The vaccine also has no real
side effects.

I am scheduled to start the vaccine treatment at Johns Hopkins on May 29th.

This is officially the last rabbit in the hat. But it's a good one. There's no way of knowing, but perhaps this will improve my 45% survival odds by a few points, and at these stakes, every little bit matters...

(thanks to Angela Love for this terrific artwork!)

Virginia Mason Protocol gets Replicated!!!!!

When I had to pick a course of treatment after my surgery, the "standard of care" chemotherapy had a 15% 5-year survival rate (or an 85% death rate, if you prefer...).

I gambled on the highly toxic "Virginia Mason protocol," which was getting about 45% of people to live to 5 years... but those results were based on only 100 people, all at the Virginia Mason Hospital. As a scientist, we don't like climbing out on those kinds of limbs. But in this case, as Janis Joplin sang, "Freedom's just another word for nothing left to lose."

So imagine how thrilled I was when I discovered that Washington University in St. Louis had replicated these results! It's a great comfort to know that I bet on the right horse... as toxic as this treatment has been, it would have really been awful if I were to find out that it wasn't really a better approach. Now, it appears clear that it is.

April 25 2007: limping across the finish line...

Well, the mantra for this week is "chemo is cumulative." My energy level is down, and we also had our first-ever medical scare. Oon Monday, I experienced sudden nausea, hot flash, and stabbing chest pains. Fortunately, this happened at the doctor's office and they quickly ruled out serious stuff like heart problems. Near as we can tell, it was a nasty episode of heartburn; it happened again Monday night, but nothing since then. (Both times, antacids and rest made the pain quickly go away). In retrospect, this was the first "Oh My God What Is Happening" sort of event that we'd had -- given the complexity of my surgery and the extent of the chemo, we've been astoundingly lucky to not have had more episodes like this. And it would be my luck to have it happen at the doctor's, where we could quickly handle it!

The GOOD NEWS: Next Monday, April 30th, at 2:30pm, I will be DONE with all treatment, and they will remove the PICC line I've had in my arm for 6 months. Then, it will take about a month for my body to restore itself to normal strength/energy/health. I can't wait!!

-------------------

April 17 2007: an email I wanted to share...

Through all of this, I've tried very hard to stay positive, but it's very hard to know how one is really doing in situations like these. I received the following email, which gave me hope that - at least during the moment described - I am managing to enjoy life through all this...

... I happened to have been behind you for a few blocks as you were driving from campus last night (Monday). Before I recognized it was you, I found myself thinking, "Gee that guy is really enjoying the moment.....driving down the road on a warm, early spring evening, top down, wind blowing through his hair, with a smile on his face.....probably headed home to a wife and maybe a little one or two......that's the way to live life.". And then you turned left and I recognized it was you. I then found myself thinking, "It's Randy! He looks so happy! And, in this most private of public moments (alone in his car, yet on the road for anyone to observe), I can't imagine anyone who IS living life more. No one is more deserving!". Thanks for sharing your happiness/your life so fully with so many of us.......on campus and in your car. You can never know how that glimpse of you tonight made my day, reminding me of what life really is all about...

April 16 2007: another fine meeting with oncologist

Only 2 weeks to go and then I'm done - everything is going smoothly.

-------------------

March 30, 2007: fine meeting with oncologist

More good news... all blood work fine, and my doc and I feel that we're just "running out the clock" on getting the last month of the chemotherapy done. Most importantly, he has cleared me for flag football, water parks, and scuba diving once I'm done with the chemotherapy (apparently, these aren't questions he often gets from his patients!)

-------------------

March 26, 2007: all systems still "go"

A week ago, I started the last 6 weeks of 5-FU chemo. I had blood work done today, and my WBC (white blood cell count, which indicates ability to fight off infection), hemoglobin (basically, the blood's ability to deliver oxygen), and magnesium levels were all acceptable.

Most importantly, I've been gaining a little weight, and I'm up to 148 pounds. The doctor gave me megestrol, an appetite stimulant, which seems to be working. Although it's very strange to each like a pig all day and still barely gain weight, which is due to the fact that my body doesn't process food very efficiently right now. That will improve when I'm done with the chemo.

-------------------

March 17, 2007: A note on staying positive

Many things have helped keep me going throughout this process, mostly knowing how many people have been rooting for me. When I was first diagnosed, I was told that the overall odds for surviving for 5 years were only 3%. My immediate reaction was: "I don't believe in the no-win scenario." (Star Trek fans will recognize this quote from the second movie, Wrath of Kahn. In the film, Star Fleet cadets are faced with a simulated training scenario called the Kobayashi Maru where - no matter what they do - their entire crew is killed. When Kirk was a cadet at the academy, he reprogramming the simulation, because "he didn't believe in the no-win scenario."

So imagine how uplifting it was when I received the following while at MD Anderson, just as things were getting rough: if you can't read the handwriting, it says "To Randy -- I don't believe in the no-win scenario -- My best, Bill Shatner"

Bill had actually visited our lab a number of year ago, while doing research on I'm Working on That a book he and Chip Walter wrote regarding what science fiction from Star Trek had actually come to pass. He visited our lab and experienced a bunch of Virtual Reality.

-------------------

March 13, 2007: Clean CT Scan!

My wife Jai & I just returned from MD Anderson Cancer Center in Houston where a CT scan showed no sign of cancer recurrence yet. There was also no elevation of CA 19-9 in my bloodwork. In other words, a clean bill of health.

This hardly means I've "won," but it means I certainly haven't lost yet! My 5-year survival odds are still 45%, but this means we're still "on the path" to winning. The tough part about these scans, of course, is that I need a "perfect record" - if the cancer re-appears, it's game over and I'll die, probably within months. So I will require some luck, but I done a lot of things at longer odds in my life than 45% .

I have six more weeks of chemo (5-FU) here in Pittsburgh. The drug fatigues me substantially (I lie down several hours each day to rest), but I can "be me" for short bursts of time -- all I really lack is long-term stamina. I routinely meet with people on campus, and I am doing a lot of work from home, and I read email throughout the day. I even traveled to Cincinnati to give a presentation on the Alice system at the SIGCSE conference last week. (Kudos to the Alice team, who are doing a fantastic job while I'm operating at 1/2 speed).

Keeping up with the kids (Dylan, Logan, and Chloe) is exhausting, but I play with them 10 minutes at a time, and then go rest, then iterate. The kids continue to hold up amazingly well, which is a testament to how hard my tremendous wife Jai has been working to keep things seeming normal through all this.

By June 1 (about a month after the chemo ends), the doctors say I will regain my normal energy level. Emotionally, the wonderful thing about this news is that it's the first time we've been able to point to a calendar and say "Randy will be back to his normal self, and we can plan activities for then." Even a small window of anticipated normalcy is a tremendous gift.

My next scan will be approximately 4 or 5 months from now (normally, it's every 3, but the research study - for whatever reason - has a long gap at this point between scans -- personally, I find that somewhat merciful!). Jai & I have elected to not publicize the exact scan dates in advance, since that just increases the number of people who know to worry, which doesn't seem productive. We will post the results after each scan.

Thanks again to everyone who has been so supportive; it has truly been inspiring how much people have been willing to do to help us.

It is a very happy day in the Pausch household!

-- Randy

-------------------
update from Randy on March 1:

Continued good news: I was disconnected from the 5-FU today.
I get 2.5 weeks off, then another 6 weeks of 5-FU then all treatments are done!
On Monday, my bloodwork was good: hemoglobin, white blood cell, and
magnesium levels were all acceptable.

Fatigue is still making me move at 1/2 speed, and the GI problems
(mostly intestinal pain and diarrhea) persist, but these are both well
known side effects of 5-FU, so we hope they'll go away starting in May
(the 2.5 weeks break is probably not long enough to my body to "bounce
back" in this regard).

Oh, and it appears our kids have pink-eye. Fortunately, that's not a
big deal, even if I get it.
-----------------------------------------------------

February 19, 2007 - Update

Today's news is all good - both my white blood cell count and my
hemoglobin count went *up* in the last week, so my body is working hard
to repair itself, even while I'm still undergoing the 5-FU chemo.
In 9 days, I will be done with the first 5.5 week session of 5-FU.
Then, I get 3 weeks off, with no fannypack or tube (which means I can wrestle
much more aggressively with the kids!).

Fatigue goes up and down wildly on a day-by-day basis - last Friday I
worked a full day, which felt really good, but spent much of the weekend
resting horizontally. Today I am strong enough that Jai & I will be
going away for an overnight mini-vacation, so she can get a tiny break
from having to take care of me and three kids.

And it's sunny!!
----------------------------------

Update from Randy Pausch 2/9/2007

I've been getting feedback from Cleah that people want more frequent
updates, so I'll try to provide Cleah with an update each week.

This week brings great news - both my overall energy level and GI tract
have noticeably improved, which has been fantastic. I am spending less
and less time in bed resting, and more time sitting in a chair working
from home, or even venturing outside the house for trips. I am still
nowhere near "normal," but I am getting out of the house each day.
The whole family made a brief appearance at last night's SCS event at UMPC
SportsWorks.

Today, I was able to go out to breakfast with my wife Jai and eat a
fairly normal meal, and not have intense gut pain afterward, which is
new, and greatly appreciated. So it appears that I am still healing up
from Houston more than I am being broken down by the 5-FU chemo I'm
currently on. Pittsburgh has been bitterly cold, but
uncharacteristically sunny the last week, and the sunshine has been most
welcome!

Oh, and in a stunning example of "kick 'em while they're down," while I
was in Houston, my domain registration for www.randypausch.com expired,
and somebody in Slovakia grabbed it an held it for ransom. Thanks to
Gabe Yu for his help in my getting it back.
Like all of us, I was saddened to hear the news of Ken Kennedy's passing
from pancreatic cancer (http://tinyurl.com/yudcpn), and of Jim Gray's
presumed loss at sea (http://tinyurl.com/2hshgw). Jim Gray was on my
thesis committee and was truly one of the most exceptional people I have
ever met. I, like all of us, are hoping against hope that he will still
be found.

----------------------------------

Update from Randy on Jan 31, 2007:

It's now been a month since I finished the Houston-based (MD Anderson
Cancer Center) portion of the treatment. The hardest part is over!

I want to thank *everyone* who has been so helpful, in so many ways, to
me and my family: the encouragement and logistical support has made it
possible to undertake this very challenging path, and we are very grateful.

Being home with the family has been wonderful, although my fatigue (see
below) has been a challenging match with 3 pre-school aged kids and
their energy levels! Here's a picture of the little rascals...

Nine days ago I started the Pittsburgh-based chemotherapy that lasts
until the end of April (5.5 weeks of a drug called Fluorouracil, or
"5FU", 3 weeks off, then 5.5 weeks of it). [Nerd factoid: this is
delivered as "continuous infusion," via a pump I wear in a fannypack.
The pump was invented by Dean Kamen, who later invented the segway
scooter]. This portion of the treatment is not nearly so bad (in
Houston, I had this drug, plus interferon, plus cisplatin, plus daily
radiation). In fact, I am still recovering more from the Houston
experience than suffering from the chemo they are giving me now - the
Houston chemo/radiation depleted my blood (specifically, my hemoglobin
and magnesium), so I'm still very tired much of the time - I sleep 9-10
hours/night, and spend some portion of each day lying in bed. My
digestive track is still partially road-kill, but the pain from that is
subsiding slowly.

Blessedly, the 24/7 nausea, which lasted a full 3 weeks after Houston,
finally went away, and I'm (very slowly) starting to put weight back on:
I am now up to 147, from a low point of 140.

For the next few months, I'll be relatively weak, but after that I
should return to full health (modulo the minor structural changes to my
GI track from the surgery itself - I've permanently lost 1/3rd of my
stomach, a few feet of intestines, my gallbladder, and 1/3rd of my
pancreas -- so you'll be seeing me eat *real* carefully from now on!).
The good news is that the Houston chemo/radiation, while grueling, in
most cases does not do long-term damage to the body.

The crucial part of all this is that I have been able to stay "on
schedule" with all the treatments so far, and that is the key to
increasing my long-term chances. Right now, there's every reason to
believe that I have a roughly 50-50 chance of surviving to 5 years;
while they'll never used the word "cured" for me, when I make it to 5
years, the odds of re-appearance really drops.

50-50 odds are much better than most folks with pancreatic cancer ever
get to, and I know which way I'm betting!

Cards can be sent to their home address.
4932 Ellsworth Ave. Pittsburgh, PA 15213
Update on Randy Pausch from Randy as of January 2, 2007
I can very proudly say I have completed the treatment. There is a ceremonial
bell one rings and I have attached a photo (I’m a lot skinnier; down from 182 to 147).
As for the experience itself, well, let’s just say that passing the
theory qualifier in 1985 is now the *second* hardest thing I’ve ever done…

I return to Pittsburgh (December 30th)today. The side effects(fatigue that keeps
my bedridden, and constant nausea) will persist another 2 weeks or so as
the chemo and radiation slowly work their way out of my system. But the key
part is that I was able to *receive* all the treatment (many patients have
to have it suspended or terminated due to the toxicity). So that means I’ve
maximized the odds off getting the benefits of the treatment.

Randy will be finished with his treatment December 29 or 30th. He will be returning
to Pittsburgh where he will continue treatment and focus on recovery.
Jai will be returning with the children December 30th

---------------------------------------------------

November 28, 2006

Randy is almost at the half way point. This Friday he will have completed his first half
of the chemo treatments. After his treatment on Friday he will take Saturday to recuperate and
then on Sunday head to Norfolk to spend a week with his family. He then returns on the 9th of December and
begins the second regiment. He is havingthe usual side effectsfrom the chemo but the Doctors are trying different things to help him
feel better and keep weight on.
November 22, 2006 Yesterday proved to be not such a great day. The treatment made Randy quite ill. He spent lots of time
sleeping but also his body was sent into deep chills where he could just not get warm. His body just shook.
It was not a restful day or night. November 21, 2006Randy is continuing to do well. Tomorrow he will be half way through his treatment. He has
been able to handle the chemo reasonably well with few side effects.
He really appreciates your cards and notes. Each one brighten his day. He has been able to
get on line and read email so much Jai is worried that his computer may start smoking.
Keep him in your thoughts.
ADDRESS:

Randy PauschRotary House1600 Holcombe
Blvd Houston, TX 77030

--------------------------------------------------- November 16, 2006Day three of the chemo and Randy is doing well. He had a unrestful night
but is able to rest during the day. He and Jai are just taking it one day
at a time. Their book of how to play cards is coming in handy. They have
learned a couple of games to pass the time.
---------------------------------------------------
November 14, 2006
Yesterday evening Randy underwent his first round of chemo the treatment
began around 6pm and finished around 1:30am. It was a late night! Today Randy is
feeling good, was able to eat breakfast. He was reading and responding to email
when I talked to Jai.
The nurses told them that it takes a little while before the
effect of the chemo begin.
So the first day is finished and Randy is in good positive spirits
and actually feeling pretty good.
Stay tuned for updates.
Cards can be sent directly to RandyRandy PauschRotary House1600 Holcombe Blvd.Houston, TX 77030---------------------------------------------------
Nov 7th update from Randy:
My chemo/radiation was supposed to start yesterday (Nov 6th),
but has been delayed a week and will start Nov 13th. As a result, I'll now be here
through Dec 30th (or longer, if there is schedule slip, which can happen).
The reason for the delay is that twice in the last 10 days, I was told “we’re seeing a mass
on a scan, and it’s possible that your cancer has already spread.” The first time was a spot
on the lung. The second time was on a spot on the liver.
Fortunately, in both cases subsequent tests showed that my cancer did *NOT* spread.
The good news is that I’m now the most scanned man in America, so we *really* know it
hasn’t spread yet. If the cancer had spread to another organ, there’s no hope
for cure, and I’d probably have 3-9 months to live. So you can imagine that going
through two rounds of "waiting for confirming tests" was a little ... um... stressful.
Although emotionally exhausting, these detailed tests are just another indication
of the thorough, high quality treatment I'm getting here at MD Anderson. This place really
deserves its reputation, and the doctors and staff have all been knowledgeable, accessible,
and incredibly humane. Plus, they have wifi throughout the hospital, so I'll be able to work
on the laptop *while* receiving chemotherapy -- how cool is that!
I'm spending this week resting and trying to gain as much weight back as possible before
the chemo/radiation (and its inevitable weight loss) kick in. I started this all
at 182, and I'm now 157. Livable, but heavier would be better.
Thanks again to everyone who has expressed concern on my behalf: that has
been a great source of comfort and inspiration for me.
-- Randy

---------------------------------------------------

Update from Randy Pausch on Oct 27th

Dear Friends and Colleagues,

First, I want to say how touched I have been by the outpouring of help and sentiment since my diagnosis. Words alone fail to express how grateful my wife Jai & I are to all of you.

My surgery went very well; they got all of the tumor. Most importantly, I have found a better option for post-surgical treatment. When I was first diagnosed (original message below), I was told I would have only a 10-20% chance of 5-year survival, even with a successful surgery that removed all the tumor. Researching like crazy, I found an experimental treatment that is achieving 45% 5-year survival rates: a true breakthrough. On Oct 31st, I leave for MD Anderson Cancer Center in Houston, where I will be receiving treatment until Christmas. Then, the last 5 months of treatment will be administered back in Pittsburgh.

The treatment in Houston is a seven week regimen of *extremely* toxic chemotherapy/radiation. The phrase "take you to the brink" has been used by several doctors describing the process. While not pleasant, this seems like a small price to pay for the increased survival odds. My wife Jai will be with me in Houston during my treatment, while our three kids are with her family in Norfolk, Virginia. The five months of treatment once I’m back in Pittsburgh is relatively tame, and I can resume a somewhat normal lifestyle in January.

From Nov 1st through Dec 22nd, I can be sent physical mail at:

Randy Pausch

Rotary House

1600 Holcombe Blvd

Houston, TX

77030

I will also be on email. Thanks again to all who have been so supportive in so many ways as I continue this battle, which I fully intend to win!

-- Randy

-------- CONTEXT: MAIL SENT IN EARLY SEPTEMBER -------------

Dear Friends and Colleagues,

I apologize for this mass email, but I know in situations like this thatrumors and misinformation spread quickly and a mass email is the best way toensure correct information for everyone.

I have recently been diagnosed with pancreatic cancer (adenocarcinoma).The good news is that I'm one of the 20% of pancreatic cancer patients whoare viable for surgical removal of the tumor, and I'm scheduled for surgery

on Tuesday, Sept 19th at UPMC Shadyside. It's a major surgery, where theywill remove the tumor (which is about 3mm in diameter), my gallbladder, partof my pancreas, part of my small intestine, and possibly part of my stomach.I will be in the hospital 2-3 weeks, andthen another 4 weeks of bed rest at home. At that point, I'll bephysically 100% again.If the surgery removes every last cancer cell, I win. Otherwise, eventuallythe cancer will recur. Statistically, the long-term prognosis is not rosy;only 10-20% of people who have the surgery survive to five years. Needlessto say, I intend to be one of the luckyones who sticks around! The median age for this disease is 66 and sothere is some reason to believe my odds will be better than the typicalpatient's (I'm 45 and in good physical shape), so they can hit me with moreaggressive chemo and/or radiation after the surgery.My wife Jai and I are focusing right now on the logistics of taking care ofour children (Dylan, 4; Logan, 2; and Chloe, 4 months) during the 2 monthsthat I am sidelined.This is obviously not good news, but I wanted people to hear this from me,and to have accurate information. I have only 6 days remaining to do a tonof logistics before the surgery, so please understand if I'm unable torespond to email or phone in the short term.Please feel free to share this message with anyone you see fit.

October 5, 2006
Randy and Jai have a lease on the rental house on Northumberland that they've been
in while their house was being remodeled. They can get out of the lease if they
find a new tenant for a 12 month lease. Please send email to jkh@cs.cmu.edu if
you know of anyone who might be looking for a nice house close to CMU:
Spacious 5 bedroom, 4.5 bath Victorian home in highly desirable "North of Forbes"
section of Squirrel Hill. Eight minute walk to Carnegie Mellon, one block
from public golf course. Huge living room, full basement, fireplace, central air,
two car garage,sheltered back yard with visual privacy.
Great neighbors. $2,000/month.

If you would be willing to help out in some way please let me know. I will keep a list of helpers should an occasion arise.

This page will be updated often. Please keep the link and check it or call me at 8x9656 for the latest information.

Items can be mailed to my attention:

Cleah Schlueter,

School of Computer Science,

Carnegie Mellon University,

5000 Forbes Avenue, 225 Smith Hall,

Pittsburgh, PA 15213

September 19:Surgery is scheduled to begin at 7am. Randy will be in surgery for at last 6 hours. After surgery he will be in recovery for at least 4 hours. While inrecovery there are no visitors not even his wife. So news will not be available until late Tuesday or early Wednesday morning. After recovery he will be in intensive care for several days. He will not be allowed visitors.

About the Hillman Center:
The Hillman Cancer Center is an international leader in cancer treatment, research and care. The University of Pittsburgh Cancer Institute (UPCI) is the only center in western Pennsylvania with the elite Comprehensive Cancer Center designation from the National Cancer Institute. Working in tandem with UPCI are the UPMC Cancer Centers, the largest and busiest cancer center network in the US, treating over 37,000 new patients each year. The network includes 43 cancer centers throughout the region with the Hillman Cancer Center as its flagship.

Cards should be dropped of to me in 225 Smith Hall or via campus mail to my attention [Cleah Schlueter].

The operation began early this morning and once the Dr's got inside and took a look they were pleased to find that the cancer had not spread. They then continued the surgery to remove the tumor and whatever else had to come out. The latest update from the operating room, (1:35pm) Randy is doing well the surgical team is now reconnecting everything and the surgery will be at least 2 or 3 more hours.

Randy is out of surgery and the doctors are very pleased the surgery went well and Randy is resting in recovery and soon will be moved to Intensive Care. He will be in Intensive Care for a couple of days.

Randy is in intensive care and is awake, alert and being kept free of pain. His best friend from High School is here and keeping him company. If he continues to do so well within a day or two he will be moved to a regular room.

Jai is visiting at least 3 or 4 times a day between child activities and naps. No other visitors are allowed at this time.

Randy was moved to a less intensive intensive care. He is doing very well. He is up and moving around. He is doing so well. The doctors are extremely pleased with his recovery. Rumor has it that the original projected hospital stay time may be shortened. We just have to wait and see.

Stay posted.......!

More Great News!!!

As of Friday afternoon……
Randy is looking and feeling much better. He got his hair washed,
shaved and spent more time walking around and sitting in the chair then
in his bed. Several monitoring devices were also removed so it is much
easier to get around. His progress is outstanding.

Randy is doing very well. He is in good spirits, sitting up, and doing laps up and down the corridor. According to reliable sources he is eating whole foods (well, at last peas and mashed potatoes). He still get tired easily but all in all he is doing great.

PS: This eating has not worked out so well. He had a very bad night (Sunday).

Monday, September 25 - 4:00PM

Randy's not doing too well today. His stomach is not dumping fluids fast enough, so the doc put a tube down to his stomach through his nose and is pumping the fluid out to keep him from vomiting. They've reinserted the morphine iv to give him pain relief. All in all, it's been a rough 24 hours for him and he's wiped out. They might insert a feeding tube into his small intestines to give him some calories so he doesn't lose too much weight. We'll find out tomorrow if that's the way they'll go.

MONDAY - September 25

This is a VERY VERY VERY Important update. NO VISITORS!!!!!!!! Visitors may be harmful to his recovery. I know the updates on his progress have been positive but it is NOT OK to visit. He is not ready. He does have good days but if he gets too tired he then suffers greatly.

The family will let me know when visitors are allowed. Randy is doing well but still has a very long road to recovery.

Remember NO VISITORS means even you.

If you want Randy to know you are thinking of him send a card or note to my attention and I will make sure his wife gets it. ----------------------------------------------------------------------------------------------------------------------------------

Tuesday, September 26 (one week)

Randy is having a good morning. Doc was in. Oxygen is good. Hemoglobin is still low but may come up today.

The doctors are watching Randy's hemoglobin it is very low. They emptied out his stomach yesterday and monitoring the fluid intake and output. He is not eating anything just receiving fluids. He is feeling a little better but is very, very tired and still nauseous. He is just working on recovering and not much else.

Randy has not felt like reading or anything so until he has the strength to do so Jai is holding all his cards and emails. I am compiling all notes and email for him to read when he is feeling up to it.

Today Randy was walking around as directed by the doctor but he remains very tired. He still has the tube into his stomach via the throat to help with drainage. In general he is doing well. Today he was able to read all his cards and collected comments he has received. He was very happy to see them. He says thanks to everyone!

Today when Jai arrived at the hospital Randy's room was being cleaned and he was nowhere in sight. She found him walking down the hall doing his laps. This is good!

The Nasogastric tube or NG that was removing the contents of the stomach is out but he remains connected to the IV for liquids. He also still has a morphine drip or PCA(patient-controlled analgesia) for pain. He is now allowed to have liquids by mouth.

Today he seems better and to have a little more energy. He still tires easily. The family still ask that no one visit.

Randy looked really great today. He's not as tired and he is able to walk 8 to 10
laps around the floor at a time. But, his GI track is still off and he is still on a clear
liquid diet. He's been limiting his intake to keep his stomach from backing up. The surgeon
came by and said Randy was making good progress and instructed Randy to increase his fluids.
He said that this GI complication only occurs in 10% of the cases and always resolves. He said
there is a good chance the GI issue will resolve by Monday. There are also other things they
are watching like sugar and hemoglobin levels.

I am very pleased to announce that I am home from the hospitall! First, I want to deeply thank all those who have shown such concern for me, and especially to those who have offered help to Jai, who has been absolutely *amazing* dealing with 3 small kids and a hospitalized husband. She is an amazing woman.

My surgery has gone well, but it will be another 6 weeks until I am fully recovered; in the meantime, I will be resting heavily at home (I can only tolerate being out of bed 1-2 hours a day, and walking up a flight of stairs completely exhausts me). I’m not allowed to lift anything heavier than 5 pounds (thank God I got the 4.5 pound ThinkPad ;-), but I am allowed to have the kids on my lap if somebody else puts them there. They are very glad to have Daddy home!

I appreciate the restraint of everyone who did not come by to visit, and I think we’ll need to keep the “no visitors” plan going for at least the next 1-2 weeks. I *am* in good spirits, just very, very tired most of the time.

Thanks again to all those who have sent cards or otherwise expressed concern and/or offered to help; having such a large community of friends has been invaluable in helping me through this ordeal.

Randy continues to rest and recuperate at home. He is able to walk around, go up and down stairs. Most importantly he is resting and healing. This week he has a Dr's appointment so I may know more later in the week.

October 10, 2006

Randy is getting stronger each day. He is able to take short walks. Rumor has it he has been seen walking on the sidewalk. He still get tired and need rest but each day he is improving. I also understand he spends some time emailing and even answering questions.

-------------------------------------------------------------------

October 13, 2006

Randy had his first post-operative appointment with his oncologist on Thursday, October 12th. The recovery from the surgery is going well.

It is advised that no longer then 12 weeks pass after surgery before the chemotherapy begin. Within the next few weeks Randy and Jai will decide their next move to battle the cancer. Randy, of course, went well prepared with a ton of research studies and they discussed various treatment options with the Doctor.

More to come......

October 18, 2006

Yesterday and today the Pausch family moved back to there home from temporary quarters. Many friends volunteered their time to help with the unpacking. As Randy reported today ...

He will be leaving Monday October 30th for a week of preliminary tests. the The following Monday he will begin chemotherapy. He will be there for 6.5 weeks. I am not sure exactly what the schedule will be there.

He and Jai are scrambling to find a workable situation so Jai can be with him and also be there for the children. With the holiday coming up there will be lots of travel back and forth between home and Houston.